The Experience of Family Members in Long-Term Care Facilities During the SARS COV2 (COVID-19) Pandemic

Abstract In-person visits are one form of care support offered by family members for residents in a Long-term Care Facility (LTCF). Family member visitation may extend to close social relationships with the residential care staff, which can be important in managing care. The long-term care population has been significantly impacted by a high number of SARS-COV2 (Covid-19) cases in morbidity and mortality but, in-person visits were limited due the public health concern. This study aimed to describe the experience of family members of persons in LTCFs during the Covid-19 pandemic. We used an online survey of 34 questions. Forty-six family members were recruited through online caregiver support platforms, and 22 completed the survey. Average participant age was 57. Majority were female with high-moderate (M=3.48) Kessler psychological distress scores. Participants reported less frequent communication with their family members in LTCFs. Difficult to reach nursing staff, who were the primary contact, was a concern. Their preferred means of communication was the telephone followed by window visits; residents preference remained for in-person visits followed by telephone. Participants described a decrease in relationship closeness with staff and a decrease in confidence in the quality of care. These results, limited by sample size, offer a beginning insight into the importance of communication between the family member and nursing staff, including the contact frequency. Structural disparities such as LTCF nursing staff levels may partly explain these deficits in supporting families during the Covid-19 pandemic. Opportunities to support family members remain a needed focus of long-term care reforms.


DETERMINING THE IMPACT OF COVID-19 ON END-OF-LIFE EXPERIENCES OF FAMILY CAREGIVERS FOR PEOPLE LIVING WITH DEMENTIA
COVID-19 has impacted all of our lives, but the population most at risk are older adults. Family caregivers (FCGs) for people living with dementia (PLWD) face challenges in providing care, which are compounded with the introduction of COVID-19 public health policies. The purpose of this study was to examine the experiences of FCGs where the PLWD died during the COVID-19 pandemic. FCGs were invited to participate in an online survey to examine their caregiving experiences during the COVID-19 pandemic, with the option of participating in a follow-up focus group. Sixteen FCGs whose family members with dementia died during the pandemic participated in the survey. A follow-up focus group was conducted to further examine how COVID-19 policies impacted their role as a caregiver in long-term care (LTC) and affected their ability to grieve. The results of the survey and focus group suggest that a lack of role clarity and inadequate communication channels between the FCG and LTC due to COVID-19 increased the strain FCGs faced during end-of-life care. At the end of life, public policies, such as reduced or no visitation, led to feelings of inadequacy and regret. Several participants also expressed appreciation for completing Advanced Care Planning documentation prior to COVID-19. Based on these results, policymakers can help ease the increased turmoil faced by FCGs during end-of-life care in future public health emergencies by involving FCGs of PLWD in the decision-making process. The completion of Advanced Care Planning documentation can also ease the burden FCGs may experience during end-of-life care.

RESOURCES AND SERVICES FOR FAMILY CAREGIVERS IN THE TIME OF COVID-19
Gwen McGhan, Deirdre McCaughey, Kristin Flemons, and Whitney Hindmarch, University of Calgary, Calgary, Alberta, Canada COVID-19 has led to increased burden on family caregivers (FCGs) for people living with dementia (PLWD), while simultaneously limiting the resources available to them. Our study surveyed Alberta, Canada FCGs to assess their needs and generate recommendations to inform policies about care access, resources, and agency supports. We conducted a mixed methods study using a sequential triangulation design (QUANTITATIVE + qualitative). Our Community Advisory Committee was involved in all stages of study planning, execution, and dissemination. Survey results informed the qualitative data collected from focus groups with FCGs. A total of 230 FCGs participated in the survey, with an average age of 59. The average age of PLWD was 75. The majority were women (77%), 46% were spouses and 41% were adult children. Respondents reported feeling more isolated (69%), more strain (66%) and decreased quality of life (55%) compared to pre-pandemic. Resource use by FCGs decreased from an average of 5 resources pre-pandemic to 1.6 during COVID-19. Services including day programs and home care were no longer available or reconfigured, leading to greater strain and heightened need for respite, which was also unavailable. Focus groups highlighted that system navigation and accessing services during COVID-19 was overly burdensome, leaving FCGs feeling abandoned by the system. FCGs reported an increase in caregiving responsibility and less access to services resulting in PLWD experiencing a decline in wellness and function. As such: 1) resources should be consistently available for FCGs and 2) FCGs require clear, correct, and concise information about COVID-19. In-person visits are one form of care support offered by family members for residents in a Long-term Care Facility (LTCF). Family member visitation may extend to close social relationships with the residential care staff, which can be important in managing care. The long-term care population has been significantly impacted by a high number of SARS-COV2 (Covid-19) cases in morbidity and mortality but, in-person visits were limited due the public health concern. This study aimed to describe the experience of family members of persons in LTCFs during the Covid-19 pandemic. We used an online survey of 34 questions. Forty-six family members were recruited through online caregiver support platforms, and 22 completed the survey. Average participant age was 57. Majority were female with high-moderate (M=3.48) Kessler psychological distress scores. Participants reported less frequent communication with their family members in LTCFs. Difficult to reach nursing staff, who were the primary contact, was a concern. Their preferred means of communication was the telephone followed by window visits; residents preference remained for in-person visits followed by telephone. Participants described a decrease in relationship closeness with staff and a decrease in confidence in the quality of care. These results, limited by sample size, offer a beginning insight into the importance of communication between the family member and nursing staff, including the contact frequency. Structural disparities such as LTCF nursing staff levels may partly explain these deficits in supporting families during the Covid-19 pandemic. Opportunities to support family members remain a needed focus of long-term care reforms.

CROSS-CULTURAL DIFFERENCES IN CAREGIVING: INVESTIGATING THE ROLE OF FAMILISM AND SOCIAL SUPPORT
Francesca Falzarano, 1 Jerad Moxley, 2 Karl Pillemer, 3 and Sara Czaja, 4 , 1. Weill Cornell Medicine, Douglaston,New York,United States,2. Weill Cornell Medicine,New York,New York,United States,3. Cornell University,Ithaca,New York,United States,4. Weill Cornell Medicine/Center on Aging and Behavioral Research,New York,New York,United States Cultural diversity in the United States (US) reflects a demographic shift, with a growing population of minority older adults and a subsequent increase in minority family caregivers providing care to aging adults. Research has demonstrated heterogeneity in the caregiving experience, with increasing focus placed on examining the impact of cultural values on caregiver (CG) outcomes. Familism has been investigated as a driving mechanism of cross-cultural differences in caregiving outcomes, yet prior work examining this relationship has yielded mixed findings. Using the sociocultural stress and coping model as a guiding framework, we examined, in a sample of 243 CGs who participated in the Caring for the Caregiver Network Study, a randomized controlled trial examining a culturally-tailored technology-based psychosocial intervention, the influence of familism and social support on positive aspects of caregiving, depressive symptoms, and caregiver burden. We also examined how these relationships vary as a function of race/ethnicity, the CG's relationship to the care-recipient, other sociodemographic characteristics (e.g., SES status), and acculturation. Results showed that African American and Hispanic CGs exhibited higher levels of familism compared to Whites. In African Americans, familism predicted higher positive caregiving appraisals, and social support significantly predicted lower burden and depression. In Hispanics, levels of familism varied as a function of acculturation, with lower levels of familism identified among US Hispanic natives. Our findings highlight that cultural beliefs, such as familism, as well as social support may be adaptive in protecting against adverse CG outcomes and point to directions for future culturally congruent, family-centered intervention approaches.

DEHUMANIZATION OF OLDER FAMILY MEMBERS: NOVEL DETERMINANTS OF ELDER ABUSE PROCLIVITY BY CAREGIVERS
E-Shien Chang, 1 Joan Monin, 2 Daniel Zelterman, 2 Naomi Isenberg, 3 and Becca Levy,4 ,1. Weill Cornell Medicine,New York City,New York,United States,2. Yale School of Public Health,New Haven,Connecticut,United States,3. University of Wisconsin,Madison,Madison,Wisconsin,United States,4. Yale University,Woodbridge,Connecticut,United States Elder abuse affects one in six older persons globally. Three limitations converge to impede progress in prevention: most research is victim-rather than perpetrator-based; the reliance on explicit, self-reported factors; and failure to account for psychological factors that motivate abuse in the first place. The current study will be the first to address these gaps by examining whether family caregivers' dehumanization of older persons, or the denial of humanness to older persons as one of the most hateful age stereotypes, could explain elder abuse proclivity. Implicit dehumanization of older persons was measured by a novel implicit-association-test developed for this study. Explicit dehumanization was measured by a semantic differential question widely used in the literature. We used the reliable and validated 8-item Caregiver Abuse Screen to measure elder abuse proclivity. In the final survey of 585 caregivers, dehumanization was found to be prevalent with 51% of the caregivers implicitly and 31% explicitly dehumanizing older persons. As predicted, implicit and explicit dehumanization uniquely contributed to elder abuse proclivity (OR=1.23, 95% CI=1.02-1.50, p=.03) and (OR=1.26, 95% CI=1.05-1.51, p=.01), respectively, after adjusting for relevant covariates including caregiver burden, and caregivers' and care-recipients' health. Also as predicted, implicit dehumanization improved the prediction of abuse proclivity above and beyond the explicit dehumanization of older persons and caregiver burden. Socio-etiological models of elder abuse perpetration and corresponding prevention design should consider the inclusion of dehumanization as a key risk factor for abuse proclivity in family caregivers.

DURATION OF FAMILY CAREGIVING AND ITS EFFECTS ON INFLAMMATION IN THE CAREGIVING TRANSITIONS STUDY
David Roth, Johns Hopkins University, Baltimore, Maryland, United States